I've been affected by Hurricane Sandy and have had no electricity/heat since Monday night and have not been able to post. My MVD is scheduled for this coming Monday, November 15, in Langhorne, PA. I had my PICC inserted this morning as an out patient. (It's extremely hard to get any IV access in me so they decided to put a central line in so that there will be no delays on Monday morning.) Monday morning they will be inserting a lumbar drain then doing a left retromastoid craniectomy and then the MVD. Even though I know it's what I have to do, I've been a nervous wreck. This hurricane business has not made things easier since I have not been able to stay at my house and probably won't be able to after surgery. I'm currently staying with NINE other people. I don't think I could handle so much noise after surgery, so a hotel sounds like the way to go if I can't go back home afterwards.
I am going to try to update as much as possible during my hospital stay.
Sorry to hear you can’t be in your home. You will need a lot of rest after the surgery. A quiet hotel room would be nice but you need someone with you to take care of you. I think it is normal to be nervous before any surgery. I was very nervous until I got to the hospital and then calmed down and realized I was ready for this surgery. Couldn’t wait to get rid of the pain. Will be looking forward to your posts after surgery. Stay calm and wishing you the best.
Connie
Good luck. I will be 2 months post MVD this sunday. Doing great and no pain! :) I'll keep you & your surgery team in my thoughts and prayers! Definetly stay at a hotel with someone, you will want things quiet and relaxing.
Thanks! My husband took the week off, so he would be staying with me. All i know is i need quiet now, i’m sure i’ll need it even more next week. I just cant wait to get this over with.
I had mine on Oct 18th! The first night was a bit rough, but other than that just really bad headaches. When I was discharged I had to go through a 10 hour car ride to get home. Only the last 30 miles or so was bad.
Noise was a really bad trigger for me and when I got out noise didn't bother me at all. I was warned about my hearing on the affected side which is getting better. It did fill like it was stuffed with cotton. Mine worked and I knew right away. I also had a lumbar drain which they removed before I was out of surgery and had a drain by the incision which they removed 2 days later.
I can't imagine the other stress that you have involved, but if you can go to a hotel it may be best. All I wanted to do was get some sleep. You will need time to focus on you and heeling. Please feel free to email me directly with any questions.
I will pray that everything goes well for you and a hotel sounds like the better choice. I hope you can have someone with you to help you. My 2nd mvd is on the 27th. Im sorry to hear you were affected by sandy. I hope there wasnt any damage to your home. Jacqueline
Thinking of you!!!
I can only imagine your anxiety level with everything else going on re; Sandy…
I hope you can find your happy place in your mind to help relieve your stress and nervousness, trust that all will be good and remember so many of us our sending you positive thoughts and vibes to carry you through the days ahead…
Huge ((((((( hugs ))))))) for you, Mimi
I will be sending you and the entire team positive thoughts. Wendy, AKA "Crashgirl", reminded me when I had my MVD 2 weeks ago, to request a handicapped hotel room & I am glad I did. Having the bar to hold onto when I went to the bathroom and the bar in the shower were helpful. I sat on a plastic chair in the big shower area, tilted my head to the side, covered my incision with a towel, and my friend shampooed my hair for me--felt great. You have had a very stressful time dealing with the storm and preparing for your surgery. You are very courageous and I admire your strength. Again, you will be in my thoughts and prayers tomorrow and the days following.
I had mine October 3rd, and I dont regret it one bit, I still have some pain from TN, but was told it can take time for the nerves to heal, i have TN and Atn, and my teeth hurt some, but they have been getting better every day.
Langhorne isnt far from me, which hospital are you going to?
I spent a few nights in the hotel before I came home, my surgery was in NY and I live in Delaware, it gave me time to sleep most of all and get some strength for the ride home. And it gave me time to eat something other than crappy hospital food, so that helped with my strength.
I am so sorry for what the storm has done, I have friends that live close to the delaware and maryland beaches and they have lost thier houses or are damaged badly. This storm was devastating, I hope both you and your home and neighborhood recover soon. I used to go to the Edison assembly plant for Ford when it was operating for meetings, shame it closed
WE GOT OUR ELECTRICITY BACK LAST NIGHT! Yay! I am very fortunate because now some are being told no electricity until Monday, Nov 11 and I was worried they were going to say the same for us again, but thanks to a lot of hard work from people all over, we got it back early. I just hope others get it back sooner than expected like we did.
So as long as this next storm on Weds doesn't do much more damage, I should be able to come home after the hospital.
Being home last night was great. I didn't get to sleep, but it was nice to be in my own house. Tonight we go to the hotel so we can be near the hospital for tomorrow morning. I'm packing up some last minute things and trying to stay calm. I'm going to have one of my sisters help me wash my hair and straighten it out so that it's not curly and messy in the hospital. (I had forgotten how difficult it is to do things with a PICC in my right arm. At least I'll only be home with it for 3 days this time.)
Thank you for all the ideas and positive thoughts. I'll try to update as much as I can.
I have TN and ATN. The worst of the pain is in the teeth, eye, nostril, cheek and ear. (Doesn't leave a lot without pain. LOL) I've heard from a few of you about the nerve needing time to heal, so I'm not going to worry if I still have pain right after surgery. It can take a few months to heal completely, correct?
The hospital in Langhorne is St Mary's. The neurosurgeon is Mark McLaughlin.
Since my ride isn't as far as yours was, mine is only 1 hr, I plan to come home afterwards.
I know what you mean about the Ford plant. A lot of people lost jobs here when it happened. I used to live 1/2 mile from the plant, but I live in the opposite side of Edison now.
I'm sorry about your friends that lost homes. My town was fortunate in that the only damage we had was from fallen trees on houses and no electricity. Just 8 miles from here homes and lives were lost. It's sad to know that this happens more often than we think around the world.
Take care!
- i
crashgirl said:
Well speaking of crashgirl, lol!!
I had mine October 3rd, and I dont regret it one bit, I still have some pain from TN, but was told it can take time for the nerves to heal, i have TN and Atn, and my teeth hurt some, but they have been getting better every day.
Langhorne isnt far from me, which hospital are you going to?
I spent a few nights in the hotel before I came home, my surgery was in NY and I live in Delaware, it gave me time to sleep most of all and get some strength for the ride home. And it gave me time to eat something other than crappy hospital food, so that helped with my strength.
I am so sorry for what the storm has done, I have friends that live close to the delaware and maryland beaches and they have lost thier houses or are damaged badly. This storm was devastating, I hope both you and your home and neighborhood recover soon. I used to go to the Edison assembly plant for Ford when it was operating for meetings, shame it closed
So I’m still in NICU. I have been vomiting a lot and my headaches have been terrible. The lumbar drain was removed earlier today, so hopefully i’ll start feeling better soon. They found an artery bulging inbetween the 7th and 8th cranial nerves and an artery compressing the lower part of the 5th. (Again, none of this was seen in any MRIs.) So i DID have a real cause to my very real pain. Right now, i have NO PAIN on my teeth, back of throat, roof of mouth, nostril, nor cheek!!! YAY!!! The thought of this is helping me make it through these rough days. I feel less TN pain everyday and that makes it all worth it.
I hope the vomitting gets under control. I did that a lot the first night. Kept the bucket pretty close.
I don't know if you're on morophine, but that was the cause of my headaches getting so bad it turns out. I was taking 2mg every hour or 4mg every two along with percacette (when I could keep it down). The switched me to percacette and roxicodone every 4 hours. Maybe worth mentioning to your doc. My nurse was the one that knew morphine could do that and brought it up to the doc. So thankful for her!
I am glad they were able to locate the problem. I know when they told me what I found, in my head I was thinking I wasn't crazy.
I am sure you will be out of ICU soon! So glad to hear from you, I know it's hard, but hang in there. It's only been 3 weeks post op for me and I haven't felt this good in years!!
